cxmoody Posted April 2022
Lealonnie and Hubby: Liver Transplant Journey
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PCP made PT appointments for him, blood tests for every week, the nebulizer appts for the inhaled antibiotics, everything. No pushback at all from Kaiser who can tend to be cheap when it comes to 'extras'. They're going to keep him on blood thinners for 3 months, then do another CT scan, and re test for Lupus Anticoagulant blood disorder which was positive last time around. May have been a false positive due to being on Predaxa, they do not know. So all of his docs are coordinated now at Kaiser, with Mayo, it's perfect. They're all using the same computer system too so they can cross reference one another. Tomorrow he has the cardiologist appt, then late in the month the Hepatologist. She is the one who will monitor his anti rejection drug levels in his blood, but ultimately MAYO is the one who makes any med CHANGES! Amazing how all of this works, I must say. We feel in good hands here due to his PCP, his Hepatologist (who's head of dept) and Mayo OVERSEEING everything and keeping on top of his meds/blood levels. He's feeling good and able to drive, too, thankfully. The drop foot is incredibly better than it was at the beginning, even without the specialized orthotic he'll be getting from Physical Therapy.
I am trying to unpack suitcases, do laundry, grocery shop, take Chuck to his appointments, and keep on top of everything going on with meds/lists/real life back home. Now I have to arrange for my mother's funeral at the military cemetery that I put off while we were planning our trip to AZ for this transplant. I will call the Neptune Society so they can get that on the cemetery's schedule in the next couple of weeks; she will be interred opposite my father & her headstone will be engraved on the reverse side of his. It's nice weather now vs. the cold & snowy weather we were having in late Feb/March when we would have had the service outside at the cemetery. Postponing it turned out to be a good idea, I think. (She was cremated and her urn is safe here at my house).
One step at a time.
Just wanted to update that we're alive & doing well! Chuck is feeling very good and adjusting to life back home with no hiccups so far. God is good and so is the Mayo Clinic! :) And so are you good people for all the support you've given me along this journey!
Cheers!
Alva, Mayo had SO many patients to handle at their Phoenix campus, they could not fit in ONE more person for labs last week, so we had to drive to their Scottsdale campus 20 minutes away........4x that week. Yet the results STILL come in within 20 minutes of the blood being drawn, all but 1 that comes in w/i a few hours. The streamlined efficiency of their entire operation is remarkable.
When DH had his transplant, it was such an emotional time. 16 years and counting. He got to see 13 grandkids born and continued his career that he loves so much.
You're still in the early days--but, wow, such great support and so much love!
And yes, there are not nearly enough donors. We made it our goal to educate people about the 'beauty' of organ donation.
I hope your donor's family accepts your thanks and can begin to heal from their loss.
All good wishes for you guys!!
Since he literally tours all year long (still, at age 82!), it's a speech he gives over and over each year.
Having been married to a "Deadhead" for nearly 30 years, I've often heard him speak of it. It's a great message.
Chuck had an appointment yesterday with his Hepatologist (liver doctor) here in Denver and she was very happy with his progress & the outcome of his transplant. She'd like to see him again in about 3 months time for a follow up.
His blood pressure has been great, he's gained a couple of pounds as his appetite returns slowly but surely, and his energy levels are getting better too. The drop foot has improved quite a bit to the point where he's driving again, which makes me happy because I hate hate HATE driving downtown Denver. 😆
His medications are being managed by Mayo, and will be for life; so are his blood test results which happen weekly. If med changes are to happen, Mayo will notify him directly. The good news is his kidney numbers are doing fine, and his liver numbers have been steadily looking good.
He will be permanently finished with one medication in 2 weeks, finished with Prednisone in less than 2 months time, and a few others will drop off here within a few months. We are hopeful to be finished with the blood thinner in August. He will have a blood test and ultrasound in late August after being off the Pradaxa for a week or so to see where his numbers are at (and if the blood clot in his arm is totally dissolved) and the decision will be made at that point. He'll be retested for the Lupus Anticoagulant Disorder as well, which the doctors think was a false positive due to having already been ON the Pradaxa when that test was originally taken. If it comes back negative, he's OFF the blood thinners for good. *Which makes me very happy after reading Newbiewife's very sad post the other day about her husband's passing due to a hemmoragic stroke thought to have come from blood thinners. My condolences to her once again.*
We are feeling good that progress is being made! Lots of symptoms Chuck was suffering pre transplant are now gone. The 'stomach of a coyote' he used to brag about is no longer like a coyote, however, but more like a squirrel or maybe a little kitten, I don't know. But not fierce and wild to where he could eat an entire slab of ribs with a quart of baked beans and 2 ears of corn. Yeah, no. Those days are behind him, I think. I'm glad to see him eat 3 bones of a slab, a small side of beans and an ear of corn. That's considered a big meal which leaves him stuffed. But that's okay, less is more in the world of food these days at 64 with a liver transplant, a pacemaker and a triple bypass under his considerably smaller belt, right? He's gone from a 34 jeans to a 32 that's literally falling off of him. 😬 He doesn't want me to order him a 30 because he says he'll be 'gaining weight' but the doc told him not to gain more than TEN lbs back. I think we're safe with a pair of 30's to at least TRY. *Update: I ordered a size 30 jeans yesterday online! LOL
I'll update again in a couple of weeks with more good news to report.
I think I got a little dizzy reading about all the things that have been going on and things that you/Chuck have to keep tab on. Oh my!!! One thing for sure, you Lea are pretty sharp mentally to handle all of these.